Long Term Treatment with Herceptin

shellbuck · 09-16-2007, 09:22 AM

Tomorrow I am having a new Mediport implanted. The first started poking through my neck, so my BC surgeon removed it. My oncologist and her decided I should have a new one because I am on long-term Herceptin treatment. I finished chemo in January (after 6 months of weekly treatments), but continue to get H every 3 weeks. My oncologist said he has another patient who has been on it for 3 years. I'm beginning to wonder what the consequences will be if I discontinue treatment.

hutchibk · 09-16-2007, 09:40 AM

There are some here who have been getting it much longer than 3 years! I think Andi BB has been for much more than that and tolerates it great and is tooling along. I am no longer on it, as I was switched to Tykerb/Xeloda due to brain mets, but it is still an option in my future. If you have had mets and it can help you stay clear or stay stable, and it's not an issue for your heart, stay on it as long as they will let you I say!

Andrea Barnett Budin · 09-16-2007, 10:15 AM

Hi Shell! It is true. You can read my signature. I've been on Vitamin H since '98. Fatigue, yes. I take supplements to boost me up. Flagging red bld cell cnt yes. For me. I used to get Aranesp (or Procrit) injections to fix that which would last mnths but NEW RULES. Medicare won't cover the now up to $8000 injection unless you're under 10. I'm at 11.1 and have never been lower. But I'm hanging in. BTW, I'm not yet Medicare patient but insur co are following it's lead. Bummer. In fact, I'm furious. I told my onc last Fri -- I PROTEST. He smiled. I said I just want you to note that in the chart. I wrote and read to me a plea to make an exception in my case as I am a slug. But, as I say, supplements (listed in 6/30 thread TO "SUPPLEMENT" OR WAIT) are keeping me going pretty well.

I absolutely believe H is keeping mets at bay. Been stable since May '99. Check out all body parts w/CT scans, transvag pelv sono, ECHO of course, bone density. No joint pain which I think is due to Omega 3s, etc. on my list. You still take all this crap asked my onc looking at my latest alphabetized list of supplements (like 3 doz). Yes, I do, I said, adding -- that's why I'm IN THE 1% CLUB. My Dr. V, rock star onc calls me that, says he doesn't know why I'm still here, says I'm very lucky. I think meditation, guided imagery, faith, determination and supplements tip my *good fortune*. Oh, and LOVE. I live open to soaking in Universal Love and offer it often to all I encounter. I just keeps on bouncing right back at me, in accordance with karmic law or something. I believe WHAT YOU THINK ALL DAY DETERMINES HOW YOU *FEEL* -- I feel joyful and serene most of the time, and deeply grateful for all I have, in awe at Life. I also believe WHAT YOU DWELL ON ALL DAY PREDICTS *OUTCOME*, so I stand guard and chase all fearful, doubting, scary, angry thoughts down. I vent them, as we must. Sometimes RIGHT HERE, as this is a great place to let it out, and then I consciously move on to reprogram my mental chatter. I WILL BE HEALTHY AND WELL. NO MORE CANSER

!!!! This serves as a command to your body. Your body hears everything you say and think, whisper and slide on by unnoticeably and follows orders. It takes your directions very seriously. And -- I remain connected to my Spirit, which I believe is my Soul -- eternal and wise, my True Self. A fragment of my Source, which is pure sacred energy, so I stay close to the Light which obliterates all darkness.

I wish you continued NED, Shell. You've done a great job so far. See no profile on you and am wondering about your med history. Also would love to SEE you, ie a pic. And would most definitely love to hear what you think your secret to success thus far is attributable to. We'd all love to hear that! Please share. And BE WELL. Sending loving, happy energy to you and all my Soul Sisters, as always ....
Andi

Bev · 09-16-2007, 08:18 PM

Shell,

Try to find Gina Popp"s posts on this site. I'm assuming you're stage IV. She had her own method of going on and off H based on blood tests, which worked well for her.

I'm a port hater, so I don't know if it's necessary to get a new one. I don't think H is
caustic like all the other fun drugs. BB